When I was sick with breast cancer, people all around me stopped what they were doing to care for me. This took the shape of friends re-arranging their schedules to drive my kids around, my husband becoming the husband and the wife, and my mom and sister screeching their lives to a halt to basically become my ladies in waiting.
I knew, to a degree, that this was happening, but I was too sick/scared/stoned to really get it. I didn’t have the mental capacity to give the concept any level of deep contemplation. And when I ‘got better’ (Ahahaha!) I never stopped to look back at the endless sacrifices that were made on my behalf. Sure, I thanked people, but I didn’t get it. At all.
In 3 short years, the tables have turned and I have become the caregiver. My mother is dying.
Mmm-hmm, yup, you heard me. Queen Mary Frances Weiss Fauls is dying.
The story is so long and convoluted that I think it best to spell it out in short bullet points:
- About 2 years ago, Jennie and I started to notice that mom’s short term memory was a bit wonky (that is an actual medical term that I have coined).
- A bit less than a year ago, we convinced mom to get some testing, which diagnosed Mild Cognitive Impairment or MCI. She was still able to drive and babysit my kids. She just might not know what day it is.
- Last August, mom started having stomach pain. An ER visit showed diverticulitis and she was admitted for 6 days, during which time her cognition took a dive and we found out that mom had Afib (a heart condition where your heart beats irregularly and often too fast). Diverticulitis is usually a one and done situation, but within 4 weeks, it was back.
- We should have insisted upon having her diseased colon removed then, but- hindsight, you know?
- She ended up having 3 full recurrences of terrible diverticulitis with hospital stays, scans, blood draws and plenty of discomfort. Her cognition and heart were not thrilled about this, though we wouldn’t know the degree to which it was sucking for a few more months.
- I used all my powers of persuasion to get mom a colon resection with a top guy between Christmas and NYE. When they called mom to confirm the surgery a few days prior, she cancelled it. You know in a cartoon when a character’s head explodes off their body in a plume of fire and smoke? That is what happened to me upon finding this out.
- The next available surgery slot was January 22. Mom was on and off (but mostly on) antibiotics from September through the end of January.
- Surgery went well, but her heart was really cranking in Afib at a constant heart rate between 130-150 for 7 days of a hospital stay.
- Mom was released to ‘skilled nursing care’ for 2 weeks, where she really started to decline cognitively. She also had a lot of swelling in her legs and a terrible cough. She was prescribed Flonase.
- After a few weeks at home, I put 2 & 2 together and made an appointment with a cardiologist for an echocardiogram. Mom’s heart function had gone from 66% in September to 14%. She was in severe congestive heart failure.
- While I was with my family on spring break in Europe (so bougie), mom spent 5 days in the hospital, as her heart continued to fail. It was decided by all doctors that home hospice was the best course of action. My poor sister had to shoulder all of this responsibility while I ate my weight in pasta.
- The severe heart failure doc came up with a cocktail of drugs that miraculously stabilized her heart and, within days, she was feeling better. We thought we had gotten a break.
- Weight started falling off mom. She went from probably 135lbs in August to 90lbs by March (she is 5’10).
- Though no doctor can nail down exactly what is happening, the best guess is Failure to Thrive, with co-morbidities of Dementia and Congestive Heart Failure.
- [Multiple hospitalizations for 3-8 days at a clip]
- [Over 40 doctors appointments in 7 months]
Super fun times.
If you have tried to communicate with me since September of last year and noticed I seemed off, it is because my brain has been in a constant state of WTF for months. All while caring for my own 3 kids, I now have become the primary caregiver to my beloved, ailing mom.
Now, caregiving is some real bullshit. To call it ‘hard’ would be the understatement of the year. You are caring with every fiber of your heart and ability and are giving of all your time and energy.
Due to mom’s short term memory loss (we are SO lucky that her intellect hasn’t been affected), she needs someone with her most of the day. We have hired a caregiving company that has wonderful women in her home with her every day. You would think this would let my sister and I off the hook. We still bear responsibility, of course, and have to do almost everything either personal or high stakes.
We manage her drugs, go to all of her millions of doctors appointments, manage all medical maintenance, arrange care for her dog and home, pay all bills, etc.
Add to that the emotional toll it takes on you to watch your mom ‘fail to thrive.’ The severity with which I want to shove cookies down her throat is overwhleming. But she put it best, “The idea of putting food into my mouth seems as foreign as putting food into my elbow.” The satiety part of her brain has just stopped working and there isn’t an edible strong enough to turn it back on. Believe me, I have tried.
We don’t have a clue how long mom has, as this isn’t a defined disease process. What we do know is that she is here now and, despite forgetting that you talked to her on the phone 3 minutes ago, you can still have lovely, meaningful conversations with her. She knows exactly who everyone is and their connections to her life.
Mom understands that she is dying. She has always supported and believed in hospice care and is grateful for them now. I wish I could say she is comfortable, but I have learned that dying isn’t always cute and the magic box of hardcore meds they leave in your fridge can’t cure that ‘hit by a truck’ feeling.
I am writing this for 3 main reasons:
- It is time for the extended circle of mom’s life to know what is happening
- I might need more help (again, sorry. I guess I am a tragedy whore?)
- I want to acknowledge all those who are caregivers. It is a relentless and often thankless job, but I see you now and I will continue to thank all those who cared for me
If you are interested in reaching out to mom, the best way is by text message or email, as there will be a record of it. Should you wish to visit her, please go through me first.
I keep re-writing the sentence, “What we need now is…,” but I can’t think of anything to write that makes any sense. I don’t know what we need. I don’t really believe in prayers. A casserole sure as hell won’t do anything, and I feel like I have already used up all my sympathy points, between my dad dying 6 years ago, losing my mother-in-law and step-father-in-law within weeks of each other 3 years ago, and my own cancer odyssey.
I could become an orphan before I turn 40, so I guess what I need is a fabric of surrogate parents and parent-adjacents. I’ll let you know when I start taking applications.
I ask that you grant me mercy for my social and functional shortcomings, both past and most certainly future. My mom may have named me Grace, but there is no one, I mean NO ONE, who has shown more Grace to this world than Mary.
2 Comments Add yours
I’m so sorry you’re going through this.
I’m an elder law/special needs attorney in New York (who also has MBC so I have a lot of training and no job) and my practice specialized in a lot of benefits, care management, guardianships, and all of the paperwork that comes along with any of this, especially death. I know IL and NY have different state protocols, but I would be happy to schedule a phone call or answer email QS (or Even text QS 602-627-0950, any time) about any sort of logistical stuff you might be dealing with. Paperwork, document organization, asset and benefit coordination, basically if you want to brain dump the stuff that’s frustrating and can be complex/confusing, I am here for you.
Emily Garnett Emilyrgarnett.com
Best loving thoughts to you and your family…..